About me

PROFILE:

I have been writing poetry and stories since I was a child, and a love of reading was instilled in me from an early age. I am passionate about writing, and hope you enjoy the books I have written. Whilst most of you sleep soundly in your beds, like many Parkinson’s patients, insomnia dictates, so during those hours that sleep eludes me, the house is tranquil and quiet, an atmosphere perfect to immerse myself in writing. My life has been a series of strange events, which have without doubt contributed to my creativity. To publish anything is to bear one’s soul to the world. It is to stand naked and let everyone see who you really are. I have poured my heart and soul out on paper and I hope to share this journey, immersing you in a story, capturing your attention and firing the imagination. Through my writing and public speaking I hope to bring greater awareness to the general public about living with chronic disease.

Tuesday, July 31, 2012

Today’s blog has nothing to do with
illness, but something happened that I had to share with you. Sometimes in our
high tech, fast pace business world, people are so focused on making money,
they sadly forget their humanity. Everyone receives ‘cold calls’ which have
become common practice all over the world, trying to sell us things we don’t
want or need. Through the years we've received our fair share of such calls,
to which I normally politely end the conversation as quickly as possible.
Having lost my mother in March 2012, I was surprised to receive a ‘cold call’ from a
phone company asking to speak to her. I said that my mother had passed away a
few months ago and asked what they wanted. The lady on the line, without a
moment’s pause for breath or hesitation, asked if I would be interested in buying a new phone! I was so amazed at the lack of empathy, that I immediately asked
the woman if she had heard what I had just said. I was very angry; repeating myself loud and clear, saying: “my mother died a few months ago, and you say nothing
except, ask if I'd be interested in buying a new phone?” At this point, the woman
understood she had not only been insensitive, but lacked tact and had handled
the conversation in a very poor manner. She then had the audacity to put the
phone down on me. As if this wasn't enough, to add insult to injury, she phoned
back two minutes later, as if the previous call had never taken place, and asked
to speak to the owner of the house, to see if I’d be interested in buying a
phone! Trying to remain calm, I said to her, “you rang two minutes ago asking to speak to my mother,
and I told you she passed away a few months ago, and now you’re ringing me back to
see if I would like to buy a new phone?” Again she put the phone down on me. I have a feeling this saleswoman won't be ringing back! I saw a charming film recently called The Best Exotic Marigold Hotel starring many wonderful British actors, one of whom is the marvellous Judi Dench. In the film you see Judi Dench giving some young sales people advice how to talk on the phone, and immediately this scene came to mind, for I think the this phone company are badly in need of some lessons, but I doubt that Judi is available!

Monday, July 30, 2012

It’s hard enough being chronically ill, not able to work, unintentionally creates additional emotional and financial strains
on the family. Every activity centres around the disabled person, having to adapt
and make special arrangements. The smallest of outings can end up being a military
style organised operation taking into account all the logistics. Just keeping
up with medical care, doctors’ appointments, hospital visits, ensuring not to
run out of medications – the on-going list is endless. On top of all this are
other problems such as suitable housing, disabled parking permits, a car large
enough for a wheelchair, holiday insurance - problematic if hospitalised within
the last six months (laws vary depending on where you live). But suffice it to
say, there are many extra things to take into account and attend to, when caring
for someone who is chronically ill. Finding out what one’s rights are is an
important yet exhausting necessity, asking for no more but no less than you are
entitled to and receiving appropriate help. Don’t be shy in asking for help; if
you don’t speak up, no one else will.

Sunday, July 29, 2012

Having been quite unwell of late, I haven’t
been to the hairdresser in a while. You know when you reach that stage of where
your hair appears a mess no matter what you do, and you suddenly just can’t
stand it a moment longer. Well I had most definitely reached that stage and looking
like I’d been pulled through a hedge backwards, decided I couldn't wait one
more day. Luckily for me, our hairdresser could see me straight away, and a
couple of hours later, I walked out of the salon feeling like a new woman. One’s
appearance is very important, and no less so when suffering ill health. There
is no reason why a disabled person shouldn't look groomed and well dressed. Although
this seemingly frivolous maintenance takes a great deal of effort when ill, it
is important for one’s morale and overall well-being. Even if you can’t manage
to put make-up on, just a little lipstick can make all the difference. Go ahead
and pamper yourself today, whether it’s a haircut, or manicure/pedicure; do
something for YOU, because you’re worth it! I shall have to leave you here, as the
nurse has just arrived to give me my Gaucher enzyme replacement therapy administered
by i.v. Have a good day everyone!

Friday, July 27, 2012

I heard a saying “Live with Intention” from
an amazing woman who is far wiser than her years and could be an example to us
all. The more I thought about these three simple words, the depth of their
meaning became crystal clear. Most people have a philosophy, viewpoint or code
by which they live. My mother used to say: “Don’t let the grass grow under your
feet” which I believe meant; live your life to the full, make the most out of
every day, be responsible for your actions, weigh words carefully, don’t gossip,
stay true to yourself and to others, and be the best person you can whilst
enjoying each moment. Life has its ups and downs, and having Gaucher and
Parkinson’s is definitely a “downer”, but my life has many “ups” too. So I try
to concentrate on the “ups” staying positive despite very trying circumstances.
Today is Friday, the end of yet another week and I don’t know where the days
have vanished to. We have a weekend planned with family and friends, so I will “live
with intention” and “won’t let the grass grow under my feet”. Have a good
weekend wherever you are and I will leave you with a question; if there was one
sentence you could be remembered for, what would it be?

Thursday, July 26, 2012

I have been asked by a number of people if I've had DBS: Deep Brain Stimulation. The answer is “no”. This highly invasive
procedure is normally only advised once a patient is drug resistant and reached the stage of literally not being able to walk or move. When medications
no longer work, then obviously the option of DBS should be looked into. Don’t
be shy in asking questions and getting other professional opinions. If you can
find someone living in your area, or who you can contact via the Internet, who has undergone a DBS recently, it’s
a good idea to speak to them personally and hear what they have to say on this
matter. Speaking with some fellow sufferers who have undergone this operation,
it has vastly improved their quality of life. However, there are some serious
side effects, and several ladies I have talked with, appear to have problems regarding
their speech. If you would like to read about one very brave lady’s account of
her journey with DBS click on Karyn’s blog and read for yourself her personal
story.

Tuesday, July 24, 2012

I've heard many people express reluctance
in declaring their health situation, for afraid they will not be hired, or if
already employed, once a company learns of a new condition/diagnosis, prejudice
and stigma come into play. I have experienced this humiliation first-hand and
can understand an employee feeling hesitant to reveal the truth. I remember
being told many years ago by an employment agency that I had to declare my
health situation during an interview. This was long before I was diagnosed with
Parkinson’s, however as soon as I mentioned that I had Gaucher disease and I
would require one day off work every six months for a check-up in hospital, they
did not have to say anything more; I could tell by facial expression alone, as the
interview was abruptly brought to an end, I would not be hired. Out of
curiosity, I told the truth about my health at four consecutive interviews,
receiving the same outcome each time. However, at the fifth interview, I refrained
from mentioning Gaucher disease, and was hired immediately and worked at that
company for several years. When I needed to go for a hospital check-up, I would
take a day off as ‘sick leave’. It is a great shame people often are forced to
lie about their health status, but until stigma and ignorance have been removed
from the work place, I don’t think those who are able to work, have much
choice. Unfortunately now in poor health, I am not able to work, but am now
afforded the luxury of being able to tell the truth. How ironic is that?

Monday, July 23, 2012

Speaking with friends who like me have been
suffering the heat this summer, it appears that as one gets older (not that anyone
wants to admit it) but the extreme temperature changes, whether they be cold or
hot, affect us more now than when we were young. I don’t like to be in air
conditioning continually that makes me feel half frozen like a popsicle in an
ice box, yet being without air conditioning in this heat can sap energy leaving one
lethargic. At a café I saw a lady
thoroughly enjoying a cold beverage, and telling the waiter, as if I was in the
well-known film ‘When Harry met Sally’, the famous line: “Waiter, I’ll have
what she’s having”, came to mind. I received a laté coffee, similar to a milk
shake but with lots of ice, which on a sweltering hot day, was cooling and easy
to swallow. Served in a paper cup with plastic lid, drinking through the straw
meant no spillage, despite shaky hands. A perfect Parkinson’s beverage! Some
months ago we were in an Italian restaurant, and we tucked in to the delicious
specialities of the house. A couple sitting at the next table, watching how we
were enjoying our meal with great gusto, pointed to us and told the waiter they’d have the same
thing! I
guess a picture is worth a thousand words, and speaks so much better than the
tempting words on a menu.

Sunday, July 22, 2012

When all are fast asleep in my house and it
is the middle of the night, insomnia and pain, like old companions keep me
awake and faithfully stay with me till exhaustion finally takes a hold and mercifully
I fall asleep. These are lonely hours for anyone in my situation, for you
cannot ‘ring a friend’ at such unsociable hours, and so each minute that
tortuously passes by, feels like an eternity. Eventually I succumb to taking
pain relief, but this isn't a cure, it merely dulls the throbbing pain. I envy
those who get a restful undisturbed full eight hours sleep, waking to greet a new
day feeling energised and ready to go. Our bed has been made especially high
enabling me to get in and out with ease, and I highly recommend anyone in my
situation, making the bed higher. It doesn't take much for a carpenter to add
wooden blocks or some other addition to raise the height of the bed, and you’ll
find this makes quite a difference. The mattress is also an important item that
one should not stint on; buying the best possible orthopaedic mattress that feels
comfortable and right for you. Silk sheets, as decadent as these might sound,
help someone who has difficulty in moving, turn over a little easier in bed. A
new day has dawned, the sun is shining, and outside I can hear the birds
heralding the morning. Our dog is outside surveying her territory and slowly
sounds of life surround me as the world stir’s from its slumber and wakes to
another day. When ill you learn to appreciate the smallest of things, even
something as simple as a good night’s sleep!

Friday, July 20, 2012

Upon Napoleon declining sex with Empress
Josephine, the phrase was coined “Not tonight Josephine”! Poor Napoleon never
actually said this, yet it became a well-known phrase, which was in fact originally
from a 1915 song. But this would spoil the story, so let’s stick to the notion
that Napoleon did indeed speak these words to his beloved. Now you may be
wondering what on earth has Napoleon and Josephine got to do with Gaucher or
Parkinson! I'm sure you are curious, but don’t worry I’m getting to the point. Sexual
intimacy with one’s spouse is an important part of the relationship, and even
though one’s enthusiasm may dwindle due to medications, excess fatigue, pain,
and all the complications involved with suffering a chronic degenerative disease,
making the effort to show affection is essential. A relationship needs sustenance
in the form of closeness, tenderly understanding each other’s needs, despite the
difficulties of the situation. You may not be the young energetic limber person
you once were; not able to swing from the chandelier or make the next door neighbours
think that an earthquake occurred last night, but all is not lost. With a
little effort and imagination, some form of romantic intimacy can and should be
made. Victoria Wood’s rendition of “Let’s do it” always makes me laugh, and so
if like Napoleon, it’s “not tonight!” relax, take a breath and enjoy a little
light British humour, that I'm sure will make you smile.

Thursday, July 19, 2012

I walk very poorly, shuffle my feet and
with my back often hunched over as if I am rehearsing a scene from The
Hunchback of Nostradamus, this must be far from an appealing look for a 49 year
old woman. Appearing confused and forgetful recently, my medications have been
adjusted once again, which for any Parkinson’s patient is a constant battle of
trying to get the optimum dosage right. My life has changed in so many drastic
ways since diagnosed with Parkinson’s; it’s a daily battle trying to cling on
to whatever I can of my former self. With numerous changes, I often wonder if
my family are able to recognise that I'm still ‘me’ inside this dilapidated
malfunctioning body of mine; the wife and mother who was once so energetic,
capable and organised. Today sadly many young people are diagnosed with
Parkinson’s and the general public are becoming slowly aware that this is not a
disease strictly for the older generation. Everywhere I go and everyone I meet is
an opportunity to educate and spread the word about Parkinson’s. You too can do
your part by bringing greater awareness through openly telling your story to
those you meet as an ambassador for Parkinson’s disease.

Wednesday, July 18, 2012

Meeting with a friend and fellow author
yesterday, was as always an enjoyable and refreshing interlude. Sharing much in
common, both of us being driven by our respective campaigns that take up much
of our daily lives; joining forces, it’s a wonderful energetic exchange of
thoughts and ideas. We have both come up against similar issues being somewhat
in the public’s eye, and writing from personal experience about topics, that
let’s face it, most of us would rather not know or think about, can on occasion
catch people off guard. Writing about one’s personal life with the intention of
letting the world read what you have to say, takes strength of conviction. Hoping
that someone somewhere who is struggling with the same issues will gain comfort
and support, realising they are not alone, is the sole reason for baring one’s
soul. There is no gain – merely the reward of feeling that one is contributing something of value and purpose, and
not wasting life on immaterial self-centred concerns of our modern day world. Speaking
for those who cannot speak; writing about topics that most cringe about, laying
everything on the table for open and honest discussion, is what we do best. However, I
had to laugh as she walked in carrying the identical handbag to mine; I guess
we’re two of a kind!

Tuesday, July 17, 2012

Today I am answering a question that a few people
have written asking me: “How do I tell my family I've been diagnosed with
Parkinson’s?”

Sorry, but there is no simple, easy
painless way of telling one’s family and friends that you’ve been diagnosed
with Parkinson’s, or any disease for that matter. Family relationships are so individual
and personal; reactions can be that of complete devastation, others whilst
shocked to hear the news immediately show concerned support. In my particular
case, we happened to be hosting a family get together at our house, where
everyone clearly saw I was shaking; unable to pour the tea, it was a very
visual picture, preparing the way for me telling them I had just been diagnosed
with Parkinson’s. Parkinson’s is not something you can hide, nor should it be
tucked away like a dark family secret. Being honest and upfront with your
family and close friends, although hard to break the news, is ultimately the
only way to go. Sadly there will always be those who cannot handle this new
information and might curiously disappear from your life, but the people who
really count, will rally around and the more informed they are about your
condition, makes it easier for them to understand what you are going through.

Monday, July 16, 2012

Have you ever felt like someone was trying
to send you a message, as if the universe in its vastness had singled you out,
and with every turn you make, the strangest feeling that a greater force is
watching over you? In the car, an old familiar song was playing on the radio “All shook up” by Elvis Presley, which I haven’t heard for a very long time, and if
you listen carefully, some of the lyrics scarily could be related to
Parkinson’s instead of the “love” about which he is singing. Arriving at a
large store that I suspect we have all visited at least once, many of us are
guilty of being regular visitors to the bright blue and yellow giant premises
whose products have names one can hardly pronounce, let alone give you any clue
as to what they are. Most items are fairly obvious, but there has been occasion,
where a guessing game ensues; no matter which way I hold the item, I can’t seem
to fathom out what it would be used for, and out of curiosity, I ask a sales
assistant. Once they've explained, I immediately get it and ask myself “why didn't I think of that?” But I digress; the Swedish store very thoughtfully has
wheelchairs and electric carts to use enabling the customer to see the entirety
of the huge premises, not missing out on a single item. I sat in one of these
electric carts, thinking I would relieve my husband from having to push me,
only to find that the speed had been fixed to “extra slow”! How did they know I
had trouble last time steering, almost knocking over fellow customers, not to
mention several displays and stacks of products on sale. Had this store foreseen
my arrival and ensuring safe passage, fixed the speed control to a snail’s pace?
Having left there it was now late; my husband didn't want us to get home and
start preparing food, so we stopped off at a little restaurant. As soon as we
were seated, a friendly smiling waiter brought over a small plate with lots of
extras napkins and individually wrapped wet wipes before we had even ordered! Was it that obvious; did I have
a neon sign above my head informing all and sundry that I have Parkinson’s and would no doubt be dropping food and making
a mess? Maybe all this meant nothing at all, it was simply co-incidence, or was there an angel watching
over me? I think we’d all rather like to believe that someone is watching out for
us.

Sunday, July 15, 2012

We all have a lot to thank John Montagu who
was the Earl of Sandwich in England, when in 1762 he invented the small meal
that could be eaten with one hand, which today we call the “sandwich”! The
sandwich has to be the most Parkinson’s friendly food, in particular when going
out or unable to sit comfortably at a table. Who’d have thought that two slices
of bread literally glued together with a combination of delicious moist
fillings, would make a satisfying not to mention easy meal to eat, especially
when in company. There’s nothing worse than the embarrassment of struggling to
eat something whilst trying to remain dignified, as you feel that all eyes are
upon you. My local dry cleaner is always delighted to see me, when I appear with
yet another impossible stain to remove from an article of clothing. I think he
should have a special rate for Parkinson’s patients, a bit like a “frequent
flyer club” except this would be a “frequent stain club”! Sandwiches are a great solution for a picnic
or having guests over; how about an old fashioned English cream tea, where tiny
bite size sandwiches are served along with dainty cakes and scones – all finger food and perfect for
Parkinson’s!

Friday, July 13, 2012

It has been a long week, and the phrase
‘Thank God it’s Friday’ comes to mind. I don’t know who thought of naming a
chain of restaurants with such an unusual although undoubtedly memorable name,
but maybe whoever it was, had just undergone a week like mine! This week has
been tough; Parkinson’s leading some kind of maddening mutiny, a frustrating
fiesta where internal tremors have persistently partied 24/7 in my body. I wish
I could throw Parkinson’s out like some kind of unwelcome gate-crasher and tell
it not to return. Wouldn't that be great? Not being able to work;adhering to no strict
schedules, the days tend to drift into one another, so I have tried
to create some form of personal routine that gives my week a framework. Despite being
housebound, I occupy myself, but yesterday a friend understanding that I hadn't been anywhere in a while, kindly found the time to take me out. I appreciated her being so thoughtful and
understanding, and it was a very enjoyable and welcome outing. Just spending a couple of hours in her company 'made my day'. Sometimes the days pass quickly, and
occasionally I find that 24 hours are simply not enough in one day. It’s a shame the government can’t add on an hour or two; would it be such a problem?
After all, they confuse the entire population by putting the clocks back and
forward twice a year for 'daylight saving', and I don’t know about you, but this yearly performance always
leaves me feeling hard done by. Did we miss out on an extra hour of sleep? Or
did we gain an hour blissfully slumbering? But thank goodness for Fridays, a
special day, signifying the end of the week, and the beginning of the weekend. A
time when family and friends can get together, and enjoy a leisurely
meal with a glass of wine. Have a good weekend everyone!

Thursday, July 12, 2012

Suffering a rare disease, or any chronic
condition, a patient’s case can become quite complex and the need for input
from various doctors specialising in different fields may be required. Having
several doctors looking at a patient through their own field of expertise,
working together as a team, is the best health care for the patient, enabling a
complete picture of the case being presented ultimately ensuring that the
correct diagnosis and treatment plan are set in place. I am very fortunate
indeed to be taken care of in this manner, and the Professor who looks after
me, being one of the leading doctors specialising in Gaucher disease in the
world, I couldn't be in better hands. He has a complete team of doctors,
nurses, and technicians that he works with, all of whom are trained to spot the
unusual abnormalities that are manifested in Gaucher disease. Add to this that I
have Parkinson’s as well; my doctors have their work cut out for them! Without
their dedication and excellence – I don’t know where I would be today!

Wednesday, July 11, 2012

Although understandably a doctor has time
restraints regarding how long he spends with each patient, narrative medicine
can still be applied. A doctor, who is aware of the valuable additional tool of
narrative medicine, not only can improve diagnosis and ultimately treatment,
but also give the feeling of empathy that patients need and deserve. Simply
applying the powers of observation can make a difference. When a patient enters
a doctor’s office, by looking and observing how the patient walks into the
room; posture, gait, facial expression, how he or she sits down, can within a
few seconds summon up a rough picture indicating the condition both physical
and emotional. Every detail, no matter how small, if observed and noted can be
of tremendous help, possibly filling in information or details, like missing
pieces of a jigsaw puzzle; a larger, clearer picture comes into view. Eye to
eye contact; another very important feature of a good consultation, and using
the patient’s first name immediately makes even the shortest of visits more
personal, leaving the patient satisfied he/she has been seen as a person, an
individual, not merely another case in the endless stream of patients a doctor
generally sees each day. These practices require little additional time, on a
regular doctor’s appointment slot, and yet can vastly improve the outcome for
both doctor and patient. The patient can also help to get the most out of a
short time period by arriving prepared; making a list of questions, or new
symptoms and additional information that may be pertinent. A list ensures
nothing is forgotten, no precious time is wasted, which again helps doctor and
patient with a joint goal, work as a team.

Tuesday, July 10, 2012

The relationship one quickly founds with a
fellow room-mate in hospital is like no other. Thrown together at random;
finding yourself ultimately in close quarters with a complete stranger,
stripped not only of one’s clothes, but any need for formalities or small talk.
Even before introductions have been made and names exchanged, often the first
words are: “what are you in for?” An unexplainable bond is involuntarily made
within minutes, and the unwritten unspoken code of survival in hospital for room-mates goes into full action. Each patient looking out for the other, as if
about to venture into battle, watching each other’s backs. This new friendship
only lasts the entirety of the hospital stay, and all the extreme intimacies
and honesty shared freely are not required or welcomed outside of the hospital
confines. Having spent much time during my life in hospitals, this is an
interesting phenomenon that I have come across time and time again. A touching film “The Bucket List” starring
Morgan Freeman and Jack Nicholson embodies this unusual alliance that can only
be formed in such circumstances, all be it with the Hollywood touch, but let’s
face it, a film wouldn't be quite as exciting without a little glamour or
poetic licence.

Monday, July 9, 2012

Most bathrooms in a house or apartment are
not suitable for a disabled person and adjustments or sometimes extensive work
is required. Simple things such as light switches that can be reached at a
comfortable height, make all the difference. A washbasin should have no cupboard
beneath it, enabling anyone in a wheelchair to sit up close with ones knees tucked under the basin. Handrails by the toilet and in the shower area are an absolute
MUST. If you can do away with shower doors along with their runners on the
floor leaving the space entirely open with a flat floor surface - this is
ideal. A built-in permanent seat can be created in the shower, or if
circumstances require a simple plastic chair or bathroom wheelchair, will then
comfortably fit in without any complicated manoeuvring. Even thinking about
where you put the toilet roll holder is important, making sure it is in reach
and one doesn't have to be a contortionist to reach the paper. Making everything easily
accessible such as towels on rails that can be reached; shelves for shampoo
etc. close at hand and footwear to slip on with ease after a shower may sound simple
but are fundamental. All these things
are important; not only does this give valuable additional independence to a
disabled person in the bathroom, but relieves a little of the extensive help
required from the caregiver. These suggestions are not only relevant to disability but to simply getting older, which try as
we might, no one can avoid - so plan ahead.

Sunday, July 8, 2012

I received a few e-mails, all appertaining
to non-slip floor tiles, so shall endeavour to answer your questions: In a
bathroom, it is highly advisable to have non-slip floor tiles, particularly if
you have a ‘wet room’. Today they come in many colours, sizes and designs, so
the choice is wide. These tiles are more difficult to clean, and don’t feel as
comfortable underfoot for they are slightly rough, but they do the job for
which they were made. Understandably, they are a little more expensive, but
considering the small amount of floor tiles required for an area such as a
bathroom or wet room, it is well worth the additional expense. If your budget
will allow, it may well be worth having non-slip tiles on your patio too. If it
has been raining, or you have garden sprinklers, the surface of your patio can
become dangerous and slippery. Less expensive flooring for a garden path is the
old fashioned brick, which requires no heavy concrete base, and simply a sand
base topped with shingle, when laid by a professional, will stay in place
producing an even surface for a wheelchair to manoeuvre and a non-slip surface
to walk upon. Wooden decking for paths and patios is an option, but the bothersome
yearly maintenance required is an addition you may prefer to do without. Ensuring
one doesn't fall is of utmost importance, so don’t cut corners – safety comes
first.

Friday, July 6, 2012

Having a creative outlet, be it painting,
writing, or some other hobby, when disabled and home-bound most of the time,
becomes extremely important. I have always loved writing, but with today’s
technology, putting ones thoughts down on paper is so much easier with the aid
of computers. Although my dexterity is not good due to Parkinson’s thankfully
the spell checker and auto-correct facility are a huge help, otherwise you
would be finding my blog entries extremely difficult to read. I first learnt to
‘touch type’ at school; a sheet of paper was taped over the keys, placing ones
hands underneath the paper learning to type copying the written text from the
blackboard at the front of the classroom. Long gone are those days, but I was
reminded of this when I came across “The Typewriter” by Leroy Anderson where a
full orchestra is accompanied by an old fashioned manual typewriter, not
dissimilar to the one I learnt on many years ago. How times have changed, when
an office had telex machines that spewed out long tapes containing little punched
holes; Gestetner machines that used special inks and stencil paper, the arrival
of the electric typewriter with interchangeable golf balls giving one the
choice of two different fonts! There were no mobile phones, and yet today if I
leave the house without my mobile phone, I feel practically naked. The mobile
phone has to be one of the most useful inventions, and often I wear it on a
cord around my neck, should I happen to fall or suddenly need help – my phone
is with me at all times. Also when hospitalised, taking a phone with can be
problematic, so again I wear it on a cord around my neck.

Thursday, July 5, 2012

I have often heard it said that an owner
chooses a dog that resembles themselves. I would hate to think I look like a
Dogue de Bordeaux with sad eyes, droopy face, many wrinkles and folds of skin,
huge scary teeth, not to mention the highly unpleasant constant drool for which these dogs are notorious! Of late, I am reluctant to agree that there do appear
to be some similarities emerging! Both of us have extreme difficulty in
walking, getting up when we've been lying down and have painful bones and
joints. I had a cake in the oven and failing to set my reliable timer, promptly
forgot there was something baking. Having no sense of smell due to Parkinson's and forgetting to use
my oven timer, I suddenly noticed my dog sitting next to the oven staring at
me. She
didn’t move from that spot and like a child playing the game of who can stare
the longest, her eyes determinedly focused on mine. Eventually she must have
got fed up at my stupidity of not comprehending what she was so clearly trying
to tell me, so she gave a short sharp bark and continued to stare. Then it
dawned on me, and I opened the oven immediately just in time as the cake started
to burn on top. Dogs are amazing – and although we trained her with all the
usual commands, we never trained her to be an ‘assistance’ dog. Over a period
of time she took on this role by herself, somehow her instincts allow her to
sense when I'm not well and she understands when I'm in need. So the dog saved
the day, or rather I should say the cake!

Wednesday, July 4, 2012

One shouldn't need an excuse to celebrate.
Every day can be a celebration of life; making the most of every moment and
each opportunity that presents itself. I am a firm believer of “being in the
moment”. One never knows what tomorrow
will bring, and life can take unexpected
detours along the way holding many surprises in store. I was thrilled to see that
an article about my story appears in the
Ladybugflights Web site in their on-line magazine. Here is the link if you'd like to take a look. http://www.ladybugflights.com/women.htm#WOMEN

Today being the 4th
July reminds me of the first time I visited the
United States, which seems a life time ago, for I was merely a slip of a girl. Arriving
on the 4th July, looking out of the window that first
evening we watched a marvellous fireworks display. Having grown up listening to
“Letter from America by Alistair Cooke” for many years, which was broadcast on the BBC radio in
England once a week, finally travelling to the USA, was an exciting trip that I fondly
remember. Happy 4th July America; enjoy your holiday and the
fireworks!

Tuesday, July 3, 2012

I was diagnosed
with Gaucher disease at the age of five; little information was known about
this rare condition in those days, and therefore it was decided that I should be under the
care ofGreatOrmond Street Hospital, the famous children’s hospital to which the
legendary author J. Barrie gave all the rights of “Peter Pan” in 1929. I
remember visiting this hospital once a year for a general check-up, and every
waiting area, department or ward had the most beautiful carved wooden rocking
horses, each one different and individual. I spent my 14th birthday
in that hospital, which was the last year I would be accepted there since I was
no longer, considered a child. Unlike Peter Pan, I had to grow up and have
since celebrated several birthdays in various other hospitals, but only in Great Ormond Street Hospital, where every
child is special and the kitchen staff never grow old, did they bake me a
birthday cake. I can’t say for sure if Tinkerbell visits there from time to
time, but some magic fairy dust must have been in the air when I underwent major
surgery, the surgeons not knowing if I would survive or not, were
delighted with their success when they eventually sent me home to recuperate. Thank you
Great Ormond Street and may you continue your magic of helping the children
that come through your doors.

Monday, July 2, 2012

My spirits were truly lifted last night
when we attended the Opera and saw a marvellous performance of ‘Rigoletto’. I
have always enjoyed listening to opera but never had the opportunity till now,
to attend a live performance. I rested the entire day so that I would be well
enough and able to enjoy the evening. I walk with great difficulty at the
moment, and told of the many steps and much walking involved, taking my
wheelchair was an obvious decision. We were allotted excellent seats in an area
meant for disabled and were pleasantly surprised to find the building was very
“wheelchair friendly” with ramps everywhere and large lifts. My heart raced
hearing the orchestra begin; watching the curtains go up, the audience’s
excitement and expectations could literally be felt. I wish I could have
magically transported you all with me last night; the amazing powerful voices
of the singers and the incredible music that Giuseppe Verdi superbly created
literally touched my very soul. Music is often used as therapy, and last night
I was drenched in the enchanting therapeutic qualities of the opera. For
someone with Parkinson’s to be able to sit still for around 3 hours is no mean
feat, so I’ll let you in on my secret! I took half a Clonex pill (Clonazepam) ¼
of an hour before curtain up, which normally is taken only at night just before
going to bed. I have also taken Clonex when flying, for it simply relaxes all
the muscles enabling one to sit comfortably for a lengthy period of time. It is
not generally advisable to take this during the day time, but for an important rare
occasion such as flying or sitting through a lengthy performance, it helps
considerably. Again I hasten to add; I am not a doctor and merely a patient
sharing my experiences with you, so please check with your own doctor that this
option would not be detrimental to you in any way. Last night was incredible and
yet another experience I can strike off my “bucket list”!

Sunday, July 1, 2012

I am trying to be a patient patient, taking
things easy, hoping that over time I will recover from my recent set-back. This
is harder said than done, since I am not one for lying in bed and doing
nothing. It’s good from an emotional and physical point of view to keep
occupied and busy when chronically ill, yet there are times when one has to
simply be patient, letting time, rest and sleep restore one’s health. I find
this a hard balancing act, keeping active whilst not over taxing myself. Knowing
I need to slow down, I had to decide which activities were the most important to
continue and those that for the time being can be put on
hold. I have had some help
in the last few weeks from a friend who is a terrific organiser and types extremely
quickly, for I found myself over run with e-mails and questions, but I was not in any condition to tackle typing with one finger! I would
like to thank her so much for lending a hand. Now feeling much better and able
to type again with both hands I will start to work through the e-mails that I
have received in the last few weeks. I hope you’ll forgive me if I answer a few
of your short questions together. As always I honour your privacy and withhold all
names. I will in time get to answer all those that require personal replies, so
please bear with me and I thank you for your patience.

“Dopamine”
is the generic name, but possibly in some countries, a
different name may appear on the box, but inside on the slip of paper you will
see the generic name mentioned somewhere.

If you feel
something is wrong with your vision – don’t just put it down to Parkinson’s, please
get your eyes checked immediately by an eye doctor.

Any kind of
physical activity you can safely manage is great, whether it’s a special class
for PD sufferers, or simply doing your own thing, be it walking or dancing in
your kitchen! Just keep mobile any way you can.